Gumption

Cancer be Gone: All Quiet on the Southern Front

Amy had a biopsy on Wednesday to search for traces of the anal cancer that was detected last May and treated last fall.  Much to our delight -- and more to our relief than we expected -- the results were negative, i.e., there was no evidence of carcinoma in any of the samples taken.   There is still some chance (5-10%) that the cancer is alive and well -- there will be more followup tests, but fewer and farther between -- and, of course, there is always the chance that a new type of cancer will be detected at some point (a risk we all increasingly face), but I choose to embrace uncautious optimism, celebrate life and enjoy the moment(s)!

I'm practicing using more graphics, and less words, to express myself, so with the help of Mutual Magick, I'll simply say

Clean Bills of Health

Thanks to the gentle prodding by my cousin, Tricia, I realize I've been remiss in posting updates on Amy's health condition.  This is actually a good sign ("no news is good news") -- I was posting most frequently when her condition was worse, and have been tapering off as her health continues to improve.

We have had four doctor's visits in the past week or so, and all have been positive (er, that is, they have had only negative results to any tests for the continued presence of her anal cancer -- although none of the tests have been very extensive or conclusive).  We met with a naturopathic physician a week ago Friday, who is optimistic that the cancer is in remission, but who plans more extensive tests to chart out a holistic treatment plan to help boost Amy's energy level, immune system ... and life perspective.  She also predicted that Amy's menopausal symptoms (e.g., hot flashes) will diminish witin the next month, and encouraged Amy to think more deeply about what she wants to do with her life [now].

We met with Amy's chemical and radiation oncologists on Tuesday, who are also very optimistic about the cancer being in remission.  The development of some breast lumps over the preceding weekend had us all a bit concerned, but a mammogram and sonogram on Wednesday revealed that there was nothing to worry about there.  She also met with her colorectal surgeon yesterday, who confirmed that the fistula was healed, the tissue surrounding the surgery site(s) was looking and feeling very good, and she can have the "port-a-cath" removed.

She will have a biopsy in January, which will test whether there are other sites of carcinoma in the vicinity of the original site of detection (and resection), and my understanding is that if none is found, the probability of remission will be reset to 95% (it's currently somewhere between 90-95%).  If no sign of cancer is found for the following two years, it goes up to 98%; and if none is found in 5 years, the probability rises to nearly 100%.  If anyone wants to know more details, there is a flowchart on page 6 of the Anal Carcinoma treatment guidelines published by the National Comprehensive Cancer Network that summarizes the tests, possible results and recommended responses that we will prepare for during the next several years.

Some symptoms from the treatment continue to linger, though most at diminished levels; during one of the oncology followup visits last week, Amy reported her general energy level was at about 50% of "normal" (which is "normal" for this stage, post-treatment).  She continues to experiment with departures from the restricted fiber diet, and still looks forward to enjoying fresh fruit again.  As I've noted before, I am deliberately avoiding the setting of any expectations, and will continue to enjoy the signs of improvement whenever, and for however long, they appear, and accept the periodic setbacks when they appear.

I will probably continue the trend of posting less frequently [about Amy's condition], unless unusual situations arise.  We have another naturopathic physician appointment sheduled for early December, so I may post an update then.  Meanwhile, we remain grateful for all the expressions of care and concern that people have shared with us!

Further Along the Road to Recovery

Amy has been showing continuing signs of improvement.  Yesterday, she felt up to getting out of the house for a few hours to watch both Meg's and Evan's soccer games (and both of them scored goals at their respective games (!)), and do a little pumpkin shopping at a nearby farm.  She has been eating more regularly, taking a few tentative excursions from her restricted fiber diet, resuming her daily routine of having decaffeinated coffee in the morning, and even enjoying an occasional sip of wine.  Her weight is the lowest in the 25+ years I've known her (117 pounds), and she is looking forward to putting some of that weight back on.  The pain and some of the gastrointestinal ailments that she has been experiencing have diminished -- though they resurface from time to time -- and fatigue is an ongoing challenge.  One of her biggest challenges, at this point, is coping with huge body temperature swings, alternating between feeling chilled (due to her lower body mass) and experiencing hot flashes ... but we prefer these challenges to some of the others we have faced recently.

We continue to enjoy an embarrassment of riches, in the form of support from our network of friends and family.  Evan was able to have a small birthday celebration last weekend thanks to the generosity of one of his/our friend's family (I earlier noted how Meg would not have had much of a celebration of her birthday if not for the intervention of other friends).  Also, some of the members of Amy's bunco group have taken it upon themselves to keep us well nourished, with a steady stream of meals that has been a welcome respite from the rather narrow repertoire of meals that I have been cycling through over the past several months (and freed up some of my time to focus on other activities).  Amy and I both share a disinclination to ask for help, and a measure of discomfort when receiving assistance, so it has been a growthful experience to accept these acts of kindness with gratitude and grace ... and release the sense of non-deservedness ("you shouldn't have...").

Speaking of grace, the title of this post was inspired by the book, Further Along the Road Less Traveled: The Unending Journey Towards Spiritual Growth, by M. Scott Peck, the sequel to one of the most personally influential books I've ever read, The Road Less Traveled: A New Psychology of Love, Traditional Values and Spiritual Growth.  The inspiration stems from his opening sentence in the chapter on discipline in The Road Less Traveled: "Life is difficult".  The book continues on to talk about the importance of discipline in meeting life's difficulties (I would call them "challenges"), the varieties of love (including its highest form, which is simply the desire to promote the spiritual growth of one's beloved), proposes that we've all got religion (which is simply one's world view, regardless of whether or how it correlates with a so-called "established" religion), and a notion of grace that emphasizes growing toward godhood (that I now recognize as aligning with the concept of namaste).  Scott Peck died recently, and I heard a great interview on NPR in which Megory Anderson credited him with being a pioneer in the are of spiritual growth, while noting that other authors have since expanded beyond Peck's work to extend our understanding of love, discipline, religion and grace.  I had wanted to note his death -- and his influence on my perspective -- at that time ... but, well, I had other challenges that life presented me that assumed a higher priority, and so I applied some discipline to focus on meeting those challenges.

Signs of Improvement

While it is sometimes difficult to discern improvement on a day-to-day basis, Amy is definitely doing better this week than last.  She has been spending more time out of bed than in bed during the day, is joining us more regularly for meals, is taking phone calls again and is gradually getting more involved in some of the many aspects of our homelife that she used to take care of entirely on her own (he admits, rather sheepishly).  There have been no new blood tests or other quantifiable measures of Amy's health condition since last Monday, so we content ourselves with these more subjective signs of improvement.

We enjoyed a 5-day visit from my mother and stepfather (they just departed today), and I was grateful to temporarily turn over responsibilities for meal planning and cooking, as well as other household and even yard tasks.  My cousin, Cindy, came over for dinner on Sunday -- our first dinner guest outside the immediate family in  months -- and she even brought dinner for yet another night (probably several nights).  Despite -- or perhaps due to -- our hardships, we recognize and gratefully acknowledge that we are very fortunate in many respects.

Delicious Ambiguity

A scheduling mistake at the hospital today resulted in an extra long wait before seeing the phlebotomist for a CBC test, but there was, as so often happens, a silver lining: Amy and I used the time to stroll through the courtyard and see the Red Doors created by various local artists to support Gilda's Club Seattle, an organization inspired by Gilda Radner and dedicated to providing "a free program where men, women and children living with cancer, along with their family and friends, build emotional support as a supplement to medical care."  The doors are being shown in various places throughout the local area, and will be auctioned off on October 20, with the proceeds being used to help fund the program.

Many of the doors were captivating, each in different ways.  My two favorites were Gilda Cubist (by Freeda Lapos Babson, a [human] artist -- and breast cancer survivor -- from Edmonds) and Pachyderm's Pride (by Watoto, Bamboo, Chai and Hansa, four elephant artists from the Woodland Park Zoo), shown below.  The former had all kinds of inspirational scrabble-like words embedded in various places, and a caption across the middle and bottom crosspieces reading "Treat everyone well" and "We are all one family" ... resonating with my own increasing connection to (and through) compassion and growing awareness that, on a certain level, we are all survivors.  The second evoked powerful imagery of elephants using their trunks to create art.

   

The poster introducing the Red Door Campaign began with a quote from Gilda Radner that prompted the title for this post:

Some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity.

This sentiment reflects our own experience with cancer, though I'm not sure that either Amy or I have reached a stage where we might use the term "delicious" to describe either of our feelings about the heightened awareness of ambiguity we've come to know over the past several months.

As for the test results, Amy's red blood cell counts are slightly higher (hermatocrit level is up to 32%), but her white blood cell counts are a bit lower than last Wednesday (neutrophils down to 1.42 and lymphocytes down to 0.32), so we will continue taking precautions against potential infections.  She has been eating more regularly, having fewer bouts of diarrhea, and the pain from the radiation has subsided a bit.  However, the fatigue persists ... and we were told today that it is likely to persist for several more weeks.  Meanwhile, we will do our best to make the most of our moments.

A Boost

Amy was feeling extremely weak yesterday, one might almost say anemic.  We went into the hospital for her bloodwork armed with plenty of reading and listening material, expecting that she would need a blood transfusion.  Her hermatocrit count had actually gone up, from 26% to 28%, since she'd been in the hospital, and so a transfusion was deemed unnecessary.  We were, somewhat surprisingly, a little disappointed, as we'd hoped that low red blood cell counts were responsible for her weakness and fatigue, and that fresh blood from a transfusion, even with its inherent risks, would help her rebound.

Her white blood cell counts were still low, but also holding fairly steady (1.5 thousand per microliter, where they were on Monday), so she was given another G-CSF injection to boost those, and an injection of Aranesp (darbepoetin alfa) to boost the red blood cell counts.  To help with the fatigue, her chemical oncologist gave her some coritcosteroids -- two dexamethasone tablets, one for yesterday and one for today -- to get her through what we hope will be the worst period of weakness and fatigue.

The first tablet seemed to have induced a positive effect, as by evening, she felt well enough to join us at the dinner table -- for the first time in a several weeks -- to enjoy a meal brought by one of our neighborhood friends ... a nice way to celebrate her birthday.  She also enjoyed the many cards and gifts she received from family and friends (in fact, she received so many that I think our daughter might have been a little jealous).

We've been through too many ups and downs to feel comfortable making any predictions, but we remain optimistic that the worst is -- or will soon be -- over.

Home Again

Amy was discharged from the hospital today, and is resting relatively comfortably in her own bed.  Last night was particularly trying for her, with little or no sleep, but her blood counts are holding steady, her fever has not returned, and her doctor was willing to let her come home.  Before leaving, she went to the radiation oncology section for her final treatment, so she has now officially "graduated", and I can finally say with confidence that major combat operations have ended.  We are all relieved to reach the end of this chapter.

While in the hospital, I found it amusing that Amy was technically referred to as a "patient", as that is not a term I would use to describe her approach to hospitalization.  I imagine some hospitalized people may indeed be patient, and delegate care management to the professionals.  Amy took a very active role in her care, despite her illness and weakness, staying on top of everything (and everyone) to ensure that she received the tests, treatments and results in a timely fashion.  Most of the caregivers at the hospital were very competent, compassionate and conscientious ... and adapted well to what I suspect was an unusually high level of, er, engagement by a person under their care.

We found out tonight that her c-dif test was negative, and so she has started Immodium again, and we are hoping the diarrhea abates soon.  She goes in for another CBC test on Wednesday, and we're hoping that the counts are all [still] within acceptable ranges.  Meanwhile, her amateur home health nurse is hoping to rise to the challenge of providing an adequate level of care.

A Ray of Sunshine

Just as I was leaving Amy's room tonight, a ray of sunshine broke through the mostly cloudy and rainy skies we've been having for the past several days, lighting up the nearby hillside.  There was very little sunshine inside at the time, as Amy's ordeal drags on for yet another day, but she called us here at home a little while ago, and was sounding better than I'd heard her for many days, and perhaps even weeks, so I am feeling a bit less stressed [again].

Her neutrophil count appears relatively stable at 1500 (just above the neutropenic threshold), and her platelet counts are holding steady at a tolerable level (er, I forget the number).  The foremost concern, on the blood composition level, is her hermatocrit count, which is hovering around 26%; if it dips much lower, she may need to undergo a blood transfusion.

Outside of the bloodstream, Amy's fever has stabilized and her abdominal cramps have subsided.  She still has pain in the area of the radiation burns, compounded by the diarrhea, which remains the chief complaint (even if it's not, technically, the most threatening sympton) at this point.  Unfortunately, we have to wait another 20 hours before the results of the c-dif test are conclusive; until which time, she cannot take anti-diarrheal medications, as they would have a negative impact if she does have a c-difficile bacterial infection.  Meanwhile, she has started a prophylactic course of Flagyl.

It's still too early to tell when she may be able to return from the hospital.  Her birthday is Wednesday, and it would be a welcome "present" if she were well enough to be discharged by then.  However, one thing we have learned through this experience is the benefit in taking one day (sometimes one hour) at a time, and so we are trying to stay prediction- and expectation-free.

Too Blessed to be Stressed

On the way to the hospital this afternoon, I passed a church whose marquis broadcast the message "Too blessed to be stressed".  While I can't say I wasn't feeling stressed when I read this message, I was feeling very blessed, and I took a mini stress vacation as I continued the drive, pondering the wisdom in this statement.

I feel extremely blessed with a network of wonderfully supportive friends.  I'd earlier noted Amy's mom's timely visit (and my mom and her husband will be visiting in a couple of weeks). Meanwhile, our friends are really stepping into the voids that are emerging as Amy is increasingly incapacitated (and I try to spend more and more time caring for her), and I am overcome with feelings of joy and gratitude at all they are doing for us.  We have received nourishment in several dimensions -- food, flowers and plants, and various [other] expressions of emotional support (including one family who will be fasting for Amy's recovery and comfort).   Our kids have been taken in by various friends at various times -- for various lengths of time -- on moments' notices, have been transported wherever / whenever they needed to go, and Meggie even got a small, surprise, bona fide [belated] birthday party today -- movie followed by a dinner at Red Robin -- thanks to the intervention of some of our friends.  Tears are welling up [again] as I write this -- we are forever grateful.

Amy is resting comfortably -- actually, she's sleeping -- next to me as I type this.  It's been another heckuva day, and Amy is wondering how much more of this she can take.  There has been some good news.  Her neutrophil counts are up to 1500, but as this is probably an artificial elevation from the G-CSF injection yesterday, they are still considering her [mildly] neutropenic.  Her temperature was normal earlier, so she didn't take any Tylenol all afternoon, though it just crept up to 100, so she took some this evening.  Her abdominal pain has dimished, possibly due in part to the switch from morphine to Dilaudid as a pain management medication.  She was also started on a TPN IV system to provide her more nutrition while on her clear liquid diet.  Unfortunately, her diarrhea is now back with a vengeance (though I'm not sure it has any causal link to the TPN), and she is feeling very, well, sick and tired.

Yesterday, we had another "hero moment" when her colorectal surgeon paid a visit.  Although the exam was painful (and painful to witness), he ruled out the [then] leading hypothesis about an abcess causing the fever, and prescribed a silver sulfadiazine salve to be applied regularly to help ease the pain from the radiation burns (and we are further fortunate to have one nurse who is from a burn unit, who is an expert at applying the salve ... and overall, the most consistently kind and conscientious of our nurses). 

The feelings of relief and renewed hope I felt when our doctors showed up today and yesterday reminded me of when I was younger, and we would visit my cousins, and my uncle, who is a doctor, went in to the hospital to see his patients every day.  At the time, I was thinking it was a manifestation of workaholism, and yet now that I can experience a doctor's visit from a different perspective, I can see why it was so important to him ... and am grateful that our doctors are likewise so dedicated to their patients ... yet another aspect of feeling blessed ... and, now that Amy is resting so peacefully, I am feeling less stressed.

Taking Advantage of Some Hospitality

Amy started running a fever this afternoon, and it was close enough to the end of regular office hours that we went to the emergency room to have her examined.  Her fever reached a level of 103.5 (F) before it started coming down (Tylenol to the rescue).  A blood test revealed that she was suffering from severe neutropenia, where the number of neutrophils (one type of white blood cell) is too low to mount an effective defense against infection, a not uncommon complication from chemotherapy.  She was admitted as an in-patient, and the ER doctor said we could expect a stay of a few days.

Everyone at the hospital was very, well, hospitable.  Amy is not one to take things lying down (at least not figuratively speaking), especially when it comes to health issues, and the nurses and doctors were all patient in explaining what they were thinking and doing, and why (and when).  That said, I will admit to feeling an emotional surge of relief, hope and gratitude when our chemical oncologist walked into the treatment room -- akin to a western movie when the marshall rides back into town (and not just because his name is Matt) -- and helped us better understand what was happening ... and why.

We were told she'd be there "a few days", but we have frequently encountered optimistic projections from the various medical practitioners we have interacted with over the past several months (perhaps oncology naturally draws optimistic people).  Meanwhile, she has a nice, single, spacious room to herself, and can enjoy some truly professional hospitality for a while.